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Turning the tide for rare disease
Turning the tide for rare disease
Living with HOD, a rare degenerative neurological condition, and fighting for answers for the community: “And you may ask yourself, ‘Well… how did I get here?’”
By CONTRIBUTOR
1 August 2022
Turning the tide for rare disease
Child Youth Care Zimbabwe: improving the lives of Zimbabwean RARE families—one step at a time
By CONTRIBUTOR
29 July 2022
Turning the tide for rare disease
The CDCN’s ROADMAP project – supporting the pivotal role of rare disease non-profit organisations in accelerating drug repurposing
By CONTRIBUTOR
20 July 2022
Charity & advocacy
ANGEL AID Unveils Raregivers™ Global Mental Health Initiative for Caregivers, Patients and Professionals
By CONTRIBUTOR
12 July 2022
Turning the tide for rare disease
The Disability Policy Centre: putting accessibility and disability at the heart of legislation
By CONTRIBUTOR
8 July 2022
Science & tech
World Orphan Drug Alliance (WODA): bringing therapies to underserved patients around the globe
By CONTRIBUTOR
6 July 2022
Rare insights
Teddington Trust and XPSG – coming together with a new identity for a new impact driven mission
By admin
1 July 2022
Medical
Intrahepatic cholestasis of pregnancy: a rare liver disorder that causes risk to unborn babies—the unique insights of Dr Laura Bonebrake, physician and ICP mother
By CONTRIBUTOR
29 June 2022
Charity & advocacy
Married on a mountain with a collapsed lung
By CONTRIBUTOR
23 June 2022
Turning the tide for rare disease
The housing crisis: the unequal impact on the disabled community and the urgent need to listen to its voice
By CONTRIBUTOR
17 June 2022
Turning the tide for rare disease
Dr Justin West’s mission to accelerate the discovery of a disease-modifying treatment for KCNT1-related epilepsy
By CONTRIBUTOR
10 June 2022
Medical
Inozyme Pharma: developing therapies for abnormal mineralisation disorders
By CONTRIBUTOR
9 June 2022
RARE News
Gene People celebrates their first anniversary!
By admin
6 June 2022
Charity & advocacy
Maryland governor proclaims June 11 is KBG syndrome awareness day
By CONTRIBUTOR
6 June 2022
Patient voice
Making peace with numbers
By CONTRIBUTOR
6 June 2022
Charity & advocacy
Let’s Play Fair—Disability Charity Scope launches accessible play campaign which demands that every child has an equal right to play
By CONTRIBUTOR
3 June 2022
Turning the tide for rare disease
A mother’s mission to raise awareness of Bardet-Biedl syndrome and promote effective partnerships between carers and medical professionals
By CONTRIBUTOR
30 May 2022
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